Teen wants to raise awareness of Crohn's disease; brother was diagosed when 8 years old

Ashley Roberts can speak so articulately about Crohn’s Disease you’d think she were a medical expert. In fact, she’s a 19-year-old Owen J. Roberts High School graduate finishing up her second year as a Social Work major at Lock Haven University.

Roberts knows a lot about Crohn’s because “it’s a subject I’m passionate about,” she said during a recent telephone interview that took place shortly before she dashed off to perform in a dance recital.

The reason for her passion can be summed up in one word: Matthew. That’s the name of her 13-year-old brother, who has suffered from Crohn’s since he was diagnosed at 8 years old. She’s seen how it affects him, not only with painful intestinal flare-ups, but fatigue, joint pain and other health issues.

Ashley wants to do whatever she can to help her younger brother, who she affectionately calls Matty. That’s why she decided last year to form a team for the two-mile Philadelphia Take Steps, Be Heard for Crohn’s and Colitis Walk, which took place on Saturday.

Her $3,500 fundraising goal for the five-member team, Matt’s Gut Busters, is a steep one. Since last August, she’s raised just over $2,000 of that — all while attending school as a full-time sophomore, 300 miles away from her North Coventry home.

With the help of her parents, Kristina and Bob Roberts, she’s held several fundraisers — including two at Rita’s Water Ice in Pughtown and one at Giovanni’s in North Coventry. She’s sold rubber bracelets, sent out donation letters and done a lot of asking in order to reach her fundraising goal.

Despite that, her primary objective isn’t to raise money, but to raise awareness, she said.

“The name of the walk is Take Steps, Be Heard, and I feel the Be Heard part is really important,” said Ashley. “Getting people comfortable with talking about this isn’t easy. We don’t have the fancy ribbons or expensive advertising campaigns that causes like cancer have. Crohn’s is the bathroom disease.”

Crohn’s is a form of Irritable Bowel Syndrome that is characterized by chronic inflammation of the gastrointestinal tract. Symptoms may include persistent diarrhea, abdominal cramps and constipation. That’s just not something most people feel comfortable talking about, Ashley noted.

“It’s called an invisible illness for two reasons. First, people who have it often don’t look sick. And also, it’s not something that’s talked about, so it’s invisible that way,” she explained.

Crohn’s is a chronic disease with flare ups followed by periods of remission, according to the Crohn’s and Colitis Foundation of America website. It affects an estimated 700,000 Americans.

It is often accompanied by loss of appetite, weight loss, low energy and fatigue. Children like Matthew who have the disease at a young age may experience delayed growth and development.

Matthew was diagnosed at age 8, when his persistent intestinal flare-ups caused him to lose 20 pounds while suffering from fevers and severe abdominal pain. It took doctor’s seven months of testing to determine that he had Crohn’s.

The disease has since gone into remission, but he requires daily medications that have a list of side effects. Chief among them is suppressed immunity, which makes him more likely to catch colds and other illnesses. And recently he was found to have low bone density, possibly the result of medications as well.

Ashley called her brother, who is an Owen J. Roberts middle school student, “the smartest seventh-grader I’ve ever met.” But school is often difficult for him.

“Last year, he missed school, was late, or left early on 102 days,” Ashley said. “He needs to know he’s not going to feel as good as everybody else, but he still needs to be there.”

Nevertheless, Matthew remains upbeat and has managed to stay on the honor roll and participate in the middle school band. His mother attributes at least some of his positive attitude toward the support he receives from his sister.

“Matty’s always been very positive, and I think a lot of that has to do with his sister being there for him,” Mrs. Roberts said. “They have a really special relationship.”

Even while she was away at school, Ashley took time to Face Time her brother last semester when he was undergoing regular three-hour intravenous treatments.

When Ashley first proposed forming a team and fundraising for the Philadelphia Take Steps, Be Heard for Crohn’s and Colitis Walk, Mrs. Roberts admits she was a bit nervous about the fundraising piece. But Ashley quickly took charge and began working to achieve her fundraising goal.

“I was really proud of her for stepping up for her brother,” her mother said.

Fundraising has given the family an opportunity to tell Matthew’s story. It also helps raise money for research, which the family hopes will eventually lead to a cure for Crohn’s

“There are a lot of people getting sick with this disease. We need to find a cure,” said Mrs. Roberts.

Even though the walk is over, there’s still time to donate to Matt’s team. Visit http://online.ccfa.org/goto/mattsgutbusters.